OP0281-PARE LUPUS EUROPE’S PATIENT ADVISORY NETWORK – A HUGE DOUBLE SUCCESS
Authors: A. Cornet, Z. Karakikla-Mitsakou, A. Sluijmers, A. Somers, J. Andersen
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Financial and Human Resources are 2 key issues faced by European federations of Patient organisations and limiting their impact. This reality is also a vicious circle as volunteers are needed to deliver the projects, themselves forming the basis to fund the organisation. When preparing its 2018-2023 strategic plan, Lupus Europe was confronted with this frustrating reality with incomes stagnating around 40,000€/year, just enough to cover its basic operations, convention and few limited size projects. <h3>Objectives</h3> To step change Lupus Europe's development and unlock both the funding and volunteering recruitment bottlenecks by creating an energising Patient Advisory Network. <h3>Methods</h3> As part of its 2018-22 strategic plan discussions, the Lupus Europe designed the structure of a Patient Advisory Network (PAN) as a key way to reach its objectives, in a way that combined both volunteers and sponsors motivation factors. For volunteers, the PAN offered an opportunity to move from a victim of the disease position to that of an actor of the change, working together with other fellows, equally motivated. Initial patients were selected based on their positive energy and desire to change things and grow skills. We identified (web based) opportunities to grow the needed skills, and encouraged participation. Finalising the team charter, drafted by the board, became the first exercise of the team, which then dedicated itself to support projects from academics, clinicians or industry, and work on own lupus Europe projects. The visibility of the PAN quickly became an additional motivator, and many applications to join were received. PAN members agreed that potential remuneration for their work would accrue to Lupus Europe and be used to motivate and reward the group. For sponsors, we redesigned our partnership proposal, using the PAN to step change engagement levels. We asked our sponsors for a leap of faith that we could drive this to success, and that they would benefit from it as much as we would by making our community more vibrant. We also offered to all a sample of what the team could do to support key projects. We engaged with academics to identify valuable projects and asked them to give training to the team. In parallel, we invested some of our savings to fund initial costs, and provided soft skills training for the group. Two years later, we applied and obtained EMA recognition as EMA eligible entity. Early successes boosted the team's morale and helped reach out to more partners. This in turn allowed us to "put the program on steroids", multiplying our support to the group and the number of projects generated by Lupus Europe. Things we had never imagined being able to do by ourselves, like the Living with Lupus survey (5000+ answers) or lupus100.org (info on lupus in 18 languages) were "suddenly" all feasible. In 2022 we recognised most experienced members as Fellows offering an aspirational "path for growth" to all, from trainee to ambassador to expert and Fellow. <h3>Results</h3> 5 years after its start, the PAN is now rich of 23 highly motivated members working on 25 projects (50/50 industry/non-industry) including some of our own design. It is recognised as a best in class organisation, and keeps growing, enabling us to achieve results we could not have dreamed of 5 years ago. Lupus Europe's funding jumped from 40k in 2017 to more than 300k in 2021, allowing to do more projects, invite PAN members to SL Euro or EULAR and professionalise some of our support. It also increased our independence from pharma, as we feel free to say no to any funder we don't fully feel happy with (and we did it already twice!) <h3>Conclusion</h3> The PAN project as transformed lupus Europe from a minimalist federation to the key voice and support of people living with lupus in Europe. <h3>Acknowledgements</h3> Many thanks to LUPUS EUROPE's Patient Advisory Network members whose enthusiasm and commitment has been critical for the success of this project. <h3>Disclosure of Interests</h3> None Declared.